Clinical trials

[testarossa71]

Hi, looking for advice on trials, please.

I was diagnosed stage IIIc in Nov 2020. Debulking surgery, then 6 cycles of taxol and Carboplatin - the latter 3 with bevacizumab. Followed by 18 months of Olaparib which then stopped working late last year. At the beginning of this year, I started on Caelyx and Carbo - the 6 sessions got very spread out though, because I unwittingly broke my back in 3 places in January which wasn't spotted by the hospital and I was trying to push through the pain for three whole months, having been told it was just a soft tissue injury and I should stay as active as possible!!

My final treatment was in July and I had a scan in August. That came back first week of Sept, and the consultant was a bit 'meh' about it. My instinct was already that I needed more chemo - possibly another 3-6 sessions so was relatively calm about it. We were about to head off for a 3 week holiday so he said he would take my results back to MDT and have a better answer for me when we got back at the end of Sept. We got back. The consultant said yes, I needed more chemo - no shock there. But I was also told that I've become platinum-resistant, which _was_ a shock. I just hadn't considered that. I'm now on weekly taxol 'for the foreseeable' according to my consultant.

I just want to be prepared for what happens as and when that stops working. I'm aware that some people access trials and would be prepared to consider that myself as and when standard treatment ceases to be effective. What I would like to know is what other health criteria do they measure your suitability against? I'm quite overweight. Even at nearly 6ft I could do with losing a good 2-3 stone. That said, I am moderately active (within the bounds set by my newly diagnosed osteopenia, and chemo-related fatigue), my resting pulse rate is great (63), and my blood pressure is textbook good and always has been. I don't have diabetes/insulin-resistance, and eat a balanced diet - we cook real food, from scratch, practically every day. I very rarely drink, and have never smoked. Would I be denied access to a trial if I'm overweight? Or do the other 'good' aspects to my health make that less important? Has anyone had any experience of being denied access to a trial on that basis? Any insight would be useful.

(I will start to monitor more carefully what I eat, and up my exercise to see if I can shoot some of the excess, even slowly.The thing is I lost over 5 stone when I first became ill and was literal skin and bones. The surgeon's words still echo in my head now 'Just think of the weight you've lost as the cushion that got you to us so we still can perform surgery. If you'd been 5ft 6 and 11 stone, we wouldn't be having this conversation right now'. I acknowledge that that is why I've not been that careful about intake, knowing that I might need that cushion again. That's going to be a challenging mindset to overcome.)

Many thanks for any insight you can share,

Annie

[Lyndy]

Hi Annie, I have been through the trial selection process. They are keen for you to be as well as possible, I had other co morbidity (RA,osteoporosis) and they took me off several drugs and replaced them with others.

Each trial has its own set of requirements, including recent treatments and stage/grade etc.

All you can do is put yourself forward. The trial I joined only recruited 3 people, so I think they were very keen to have me and I was willing to travel 2.5 hours each way to the Marsden to do it, so they could see I was keen.

You can always ask up front if weight is an issue…the trial has to follow the sponsors instructions, so they will tell you if you are not likely to qualify. The Marsden research team are very helpful and may suggest alternatives xx

[testarossa71 in reply to Lyndy]

Thank you. I’m not there yet, I don’t think - I’m willing the weekly Taxol to do its thing! I’ll try and knock a couple of kilos off anyway. it certainly won’t hurt. And if there is a weight criteria, at least I’ll be a little closer to it.

Thank you again and I hope your treatment goes well.

Annie

[Katmal-UK]

Hi Annie, I’ve been on 3 clinical trials, still actually on third, and always been told that I can go on a clinical trial as long as I meet the criteria, never been questioned on my weight, in fact I’ve gained a lot of weight and my Consultant always waves away my concerns about it. I’ve actually been told I’m fit and healthy which always makes me smile. Good luck x

[testarossa71 in reply to Katmal-UK]

Thank you, this is really helpful. I will be increasing my activity and being more mindful about my caloric intake which should help generally anyway. I am grateful that other markers of ‘good’ health are generally on my side.

Thank you again, and I hope your treatment goes well.

Annie

[StilCrazy]

Hi. Weight is a complex subject for all of us long before we get cancer. [edited by moderator] When last I mentioned dietary advice on this forum my message was cut. There is sooooo much online about cancer diets.... Lots of it is contradictory and frustrating but some of it will resonate. I was thin when I got HGSOC and still lost 20 lbs but I didn't die. Being overweight is bad for your osteopaenia and your general health so whether you get onto a trial or not , losing a little weight in a healthy way without being guilty or tormented by it, has gotta be a good thing no matter what.

[testarossa71 in reply to StilCrazy]

I don’t need dietary advice.

I asked if weight had been a factor for fellow group members in being accepted or rejected for trials.

[StilCrazy in reply to testarossa71]

Really sorry. You don't need that. I misunderstood your post

[testarossa71 in reply to StilCrazy]

Apology accepted. Thank you.